I Have Always Loved My Son, but I Have Not Always Known Him

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“Daddy, I want a baseball bat shirt,” Owen tells Scott, as he is getting ready for bed.

“You have a Yankee shirt, buddy. You wore it today,” Scott replies, helping Owen tug on the pants to his Batman pajamas.

“No, a bat shirt,” Owen persists.

I hear them from the other room and call in to Scott that I think he means a jersey, like the ones worn by the players he saw at the game today. On our walk back to the car from the stadium, Owen had declared, “When I am a big, big boy I play baseball on ‘dis team, here.”

Scott pulls Owen’s pajama shirt on, careful to ensure that the black cape affixed with velcro remains on Batman’s back, and asks “Do you mean a jersey? Like the players wore?”

“Yessss!” Owen exclaims, holding out the “s” with his enthusiasm, though is sounds more like “Yethhhhsss”, clearly thrilled that his message has gotten through.

And more messages are getting through every day. From both sides. We understand more from him, he understands more from us. And it is wonderful and enlightening. And every single day I find myself eyes-widened, repeating some phrase he has just uttered to the person who has served as witness to it right there beside me. At times it is Scott, or our beloved babysitter or one of Owen’s therapists. It is a familiar expression for me now, eyebrows raised in happy shock, the kind of thing that I hope does bring me wrinkles as a result of skin-stretching overuse.

I have always loved my boy. I have always wanted to take care of him – to protect him and do whatever it was that I could to help him, to make sure he was getting what he needed – at first to survive and then to thrive. I have always felt connected to him. Whether it’s due purely to maternal instinct, or how affectionate and cuddly he is or how much we are alike, I don’t know. It was agreed upon long ago that our careful, introverted, thoughtful Parker is very much her father, and that Owen – extroverted, impetuous, impish to the core – is so much like me. But it doesn’t really matter why, does it? We don’t question why we feel connected to our children – only the ways that we don’t.

I have always loved my boy.  But I have not always known him.

And that is hard to admit. And likely hard for others to comprehend, to relate to.

But it is my sad, honest, raw truth.

I have always known Parker. Every cell in her petite little body is familiar to me. I can tell you how she will react in any given situation, how to calm her down and how to rile her up. I can tell you which shirt she would choose to wear in a fashion lineup. I can tell you when she needs to be left alone and when she needs to be cuddled. I know her real hurt cry from her fake attention-seeking cry. I know the things that fill her with pride and those that deflate her confidence like the proverbial helium-filled balloon whose end has been released. I know the point to which I can push her to try something new in order to show her she is more capable than she allows herself to believe and when not to push, to allow her to hold back, to wait it out until she is more comfortable.

When Owen announced his larger-than-life intention to play baseball for the Yankees when he grew up, I asked Parker what she wanted to be.

“I want to work at the stadium. In an office.” Practical, sensible. Scott’s daughter to the core.  Scott and I smiled at each other over our children’s bobbing heads.

She has always been an open book to me, while he has been something more akin to those faux leather-bound tomes found in fancy libraries in historical homes  we have visited from time to time. If you pull one off the shelf – these books with titles like “The Call of the Wild” or “Anna Karenina” or “Great Expectations” — and you attempt to thumb through them, you will find your thumbs useless, unable to budge the sealed pages. What should be familiar – you know these books, they look familiar to you, you should be able to read what’s between the covers of these classics you hold in your hand – you are somehow no longer privy to.

Owen has been a closed book – though he has a cover I recognize and can maintain and keep clean and take for careful restoration when needed. I can admire what is before me, what I hold in my hands. I can marvel at what I am sure is something wonderful inside, even if I have not yet been granted access. But I do not know for sure what is at its core. At his core.

Until now.

Until this summer when something inside him cracked open. Until something clicked, and opened and began to blossom before us all.

And I have no idea why or how or when exactly this happened. And I’m honestly not even sure if I care.

Because some things should not be analyzed – only enjoyed. Sometimes you read “The Age of Innocence” to discover themes, to analyze the imagery within – and sometimes it’s purely to allow yourself to get lost in the gorgeous and well-told story as it unfolds, to soak in all of the wonderful language, the beauty of the words kept between the protective covers of its now-cracked binding.

I am putting aside my typical over-analyzing, questioning self for now. I am enjoying the open book my boy is becoming, even if he is just sharing this new narrative of his on a page-by-page basis. It is a cliffhanger, and I am hooked on every word.

Great Expectations indeed.

This post originally appeared on Jamie Krug’s personal website.

More from Jamie Krug on The Mighty: I Thought We Had More Time

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This Is My Definition of Autism

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Kerry SF Picture

My name is Kerry, and I have Pervasive Developmental Disorder – Not Otherwise Specified (PPD-NOS).

This means I have autism.

This does not mean I am autism.

This means I see the world sometimes in a different light.

This does not mean I’m in the dark.

This means from time to time I may have a difficulty expressing my emotions.

This does not mean I don’t feel.

This means when I communicate, I do it with a style that is my own.

This does not mean I don’t have a voice.

This means I may have sensitivity when it comes to a certain feel or touch.

This means sounds can sometimes make me feel uneasy.

This does not mean I’m deaf or hard of hearing.

This means I can often focus on certain interests for a long period of time.

This does not mean those are my only interests.

This means I’m the only person in my family to have this.

This does not mean I’m alone.

This means I may have 500 other symptoms/capabilities that are different than yours.

This does not mean I’m any less of a person than you are.

My name is Kerry, and regardless of what PPD-NOS means or doesn’t mean, autism can’t define me; I define autism. I can only hope those individuals, regardless of being autistic or not, can define their lives and their journeys in the way they see it.

This post originally appeared on the SF Gate Blog
and later on Autism Speaks.

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This Man's Love for Cats Led to a Wildly Amazing Creation

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Greg Krueger has built something truly incredible for his furry friends to enjoy. Were I a cat, this is certainly where I would want to live.

His endearing fondness for the frisky pets inspired him to spend more than 15 years turning his house in Minnesota into a feline fantasy playground, complete with ladders, ceiling catwalks and secret hideaways, according to KHON 2 News.

The 49-year-old, who was only recently diagnosed with Asperger syndrome, relates to his cats easily and loves them unconditionally. With a home like that, those kitties must love him right back.

Check out his awesome creation in the video below.

 

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When I Noticed My Wife Crying Behind Her Sunglasses

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We were at the beach last week. My wife and I were standing ankle deep in the water watching our son, Eric, having a ball swimming and jumping over the waves. A group of three other kids ran up and started playing, splashing and chasing each other in the water. Eric gave them a passing glance and went about his business.

I saw it happen, as I’ve seen it happen countless times in the past. My wife has gotten skilled at crying behind her sunglasses so others can’t obviously see her pain. But I saw it. I have learned that there are times when there is nothing I can say or do. I just have to let the moment happen and dissipate naturally. That’s what I did. It took a few minutes. Then the moment lifted, and we went back to our quiet family swim in the ocean.

I think these moments are easier for me than for her because I am not a social butterfly. She is. Her greatest pleasures in life have come from gatherings with friends and social experiences with family. My greatest pleasures have come from quiet solitude and peaceful reflection by myself or with my wife. She sees my son’s lack of interest in his peers as him missing out on pleasure. I understand how she can see it that way. But I see it as simply taking my own introversion a step further. I want her to know that while he obviously needs to learn social skills and to be nudged out of his comfort zone into interacting with his peers, he is not necessarily deprived of pleasure from his lack of interest in these relationships.

I often joke that I could do a 10-year prison sentence with ease. I would be just fine stranded on a desert island for a while. For me, social interactions are work. It’s different for her. Her love for her son is one of God’s wonders. I want her to understand that he will be OK. I want her to trust that smile on his face when he is doing his own thing and not to feel sorry for him because he isn’t interested in chasing and throwing sand at his cousins. I want her to understand that, in so many ways, he is me… and look at the happiness I have found… with her.

The author hugging his wife after participating in a race

This post originally appeared on Bacon & Juice Boxes: Our Life With Autism.

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What I Told My Son About His Big Brother's Autism

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PB200076_1 My beautiful babies are about to turn 10 and 8. This brings me to a time of serious reflection. I’ve been watching the endless slideshow of photos on our computer, sobbing, remembering, loving, feeling grateful — all those emotions and more, at once.

It makes me remember our path towards an autism diagnosis for “Big Brudder.” You may or may not know that Big Brudder was born with a cleft lip and palate. We thought this would be our primary area of concern for him. For a long time it was. It still certainly occupies quite a bit of our parental thoughts and concerns, but little did we know, autism would become our main focus.

Big Brudder from very early on only liked to be held in a certain way. I would describe it as “snug.” He loved being swaddled and held firmly. He was always alert – looking around and sometimes through you it seemed. He progressed normally and hit his milestones on time, mostly. Except language. Here he was hyper verbal. He didn’t really babble much, perhaps because of the speech therapy he received for his cleft lip and palate. Or, it could be that we didn’t baby talk. He spoke in complete sentences and loved showing what he “knew,” which was a lot.

Beginning at his two-year checkup, I asked every year about autism. He was a toe-walker, he had a compulsion about lining up his toys a certain way, he would get lost in his own little world for hours at a time and not hear us, his food aversions were severe and the meltdowns… they could last for days. I was told every year, “He’s too social.” They didn’t see him at home. Yes, he interacted with us, but it wasn’t reciprocal. Until we had the “Wee One.”

The other day, the Wee One was in the midst of a rough patch. We talked through it, and then I told him this: “You know how Big Brudder sometimes (OK, a lot of times) seems lost in his own thoughts? Well, when he was almost 2 and you weren’t quite born yet, it was much more severe. We could call his name, we could talk to him and it was as if he couldn’t hear us. All of that changed when you came in to the world. Suddenly, Big Brudder was connected to someone in a way we hadn’t seen yet. He loved you more than he loved anyone before. I tell you this not to give you a burden but a gift. That is how much you are loved.”

The Wee One had tears rolling down his cherubic cheeks. I said, “Baby, what’s wrong?” The Wee One replied, “They are tears of joy. I want to tell this story to Big Brudder.”  To him I said, “Baby, this story is for you to hold in your heart. Hold it close now and always. Remember it when Big Brudder doesn’t seem to be listening. You are his best friend, forever.”

Happy Almost-Birthday, my loves.

PC080001

This post originally appeared on Autism in Our House.

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Autism From Our Dog's Point of View

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Allow me to introduce myself. My name is Wolfie.

I am half Bichon and half Shih-Tzu, also known as a Teddy Bear Dog or a Zuchon. I am sixteen and a half pounds and I barely stand a foot off the floor, but do not let my size fool you. I may be small, but I am mighty.

I’ve been with my family for five months now. Everyone keeps saying the Easter Bunny brought me as a surprise.

But I remember the two biggest people in the family—the mom and the dad people—came to pick me up in a conference center off the highway in a small town called Portsmouth. We drove around for hours and then snuck home because they said the kids were finally asleep. I never did see a bunny.

For the first two weeks I was home, I tried this strategy:

Pee on couch. Look adorable.

Poop on rug. Appear irresistible.

Pee on floor. Tilt head to one side with cutest expression possible.

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This went on for a while until the dad guy said I was on something called “thin ice” and I’d better get house trained soon. He had just stepped in one of my puddles wearing only his socks.

He pretends he doesn’t like me, this dad. But I’m not fooled by him. When it’s late at night and all the small people have gone to bed and the mom is upstairs reading, he sits on the big red couch, and he calls to me in a quiet voice.

“Wolf, come on boy, come sit with me.”

I sit next to him and we watch shows that the mom doesn’t like — baseball and politics and something weird called “The First 48.” But I can tell by the absentminded way he rubs my foot that he’s only half-listening to the television. Instead he’s thinking about his patients and his children and tax returns and healthcare and insurance.

There are a lot of people in this house. Seven. Two big people and five kids. One time a man came and delivered some food in a brown paper bag that smelled delicious. When he stepped into the kitchen and saw all the kids at the counter, he asked if we were having a birthday party.

The round boy laughed and shouted, “Yes!  It my birthday! Let’s sing HAPPY BIRTHDAY TO ME! Happy birthday to me!” until the mom said, “Okay, Henry, we heard you. Eat your egg roll.”

This Henry boy is the smallest, but he isn’t too small. Life is very, very exciting for him, and he is very loud about it allHe fills up every room with his chatter and his laughter and his drawings, and he is squishy and delicious and curious and smart. He is so alive, you can almost see his heart beating through his favorite Batman shirt.

There are all these boys and only one little girl. When you look at her you just think about the color pink. She is sweetness and light and airy and calm, like the most delicate wafer cookie you hold on your tongue until it melts.

But she works very hard. She is the first one awake to take me out in the morning, even before I ask, and all day long she is trying to do things for other people — pack their snacks or sweep the floor or straighten the playroom.

Her mother worries, and the dad guy hopes if he tells her how beautiful and smart and sweet she is, she will believe it forever and never listen if someone accuses her of being fat or ugly or stupid or worthless.

I’m not worried, because this pink girl is so very strong.

There is a very big boy, a boy who stands taller than the mom’s shoulder. He wears glasses. They call him a “tween” sometimes, and I don’t know what that means but it seems to annoy him.

He and the mom can really get each other going laughing. They both like the same jokes. But there is a strain that I don’t think was there before. It feels new.

It feels like the beginning of something and the end of something all at the same time. He is starting to cleave from them, to long for video games and something called an “iPhone” and movies that are PG-13. The mom, she knows this, and her heart is aching to make the most of the time she has left, before this tween will pack up his glasses and his gym shorts and his Nook and drive down the driveway to a faraway place called “college.”

I may be very close to the floor, but I see it all.

There’s another big boy, just about as tall as the first boy. He also wears glasses. From behind they look like the same boy and sometimes people mix them up, but I never do.

From what I understand, I was supposed to help this boy. He has something called “autism” and he was very, very afraid of dogs, even little ones like me.

When the mom first brought me in from the garage where I was hiding and trying to stay very, very quiet, all of the kids squealed and laughed and clapped their hands. But he didn’t. His face was all twisted up and his voice was very loud and angry-sounding.

“I DO NOT like dogs. You have ruined my life. With this dog.”

I don’t know anything about autism or how to help people who have it. So I just did the only thing I knew how: I waited. I waited and waited and one afternoon when no one was watching he crept over to where I was lying on the couch. With one finger he stroked my paw.

“You are. Soft.”

This boy gets very, very mad. One day over the summer his temper rose until it felt like the sun was shining inside the house, the rays too hot to touch. He was screaming and hitting his head over and over again.

“No para! I will not have a PARA!”

I did not know what a para is, but the mom seemed to because she kept talking softly, telling him to take a deep breath and calm down; they would talk about it.

He came for her then. With his fists curled into the tightest balls he charged her wordlessly. She grabbed his wrists and held them with her long fingers and said, “Enough Jack,” so sharply her voice was like a knife cutting through the hot, still room.

He dropped his arms to his sides, and the only sound was his whimpering, “no para no para, no para.” I barked once, twice, my voice not as sharp as hers — more like an ice cube clattering into a smooth glass.

He fell to his knees next to me and buried his fingers into the fur around my neck, where it’s longest and deepest. Through his fingertips, I understood. I knew. Somehow, because of this strange thing called a para, the boy felt different. He felt worried and alone and disappointed.

He felt less.

There is another boy. He looks just like the dad, with dark hair and deep brown eyes that make you think of chocolate. He is all fun, this one.

But every once in a while a shadow crosses his face, and his eyes get cloudy, like the rain is coming. That’s when I know he needs a little extra cuddle, and I just turn on my back so he can rub my soft, white belly. He rubs it until the sun shines again.

“Come on, Wolfie, run outside with me!”

A couple of weeks ago, the big yellow bus started coming around again. We all walked down to the bus stop and everyone was so excited.  But when the kids got on and the bus pulled away, the mom put her head on the dad guy’s shoulder and said, “Oh, Joe.”

Slowly the three of us walked back up the driveway. They looked down and started talking to me in a funny voice with funny words. “You a wittle doggy, wight?  Just a wittle pup-pup.”  I felt confused.

Then I understood. Their babies were gone. Now I was the baby.

boy playing outside with a dog Last weekend we all went to a big field to play with a black and white ball. The mom and dad kicked it around with the kids, but the second boy said he only wanted to hold my leash and run with me.

So we did. We ran and ran through the fields together. And with each big step he took I could tell, for the moment, he was free. Free of the shame and rage and confusion and panic that follow him around all day like uninvited guests.

Running by my side  through the rich green grass, he wasn’t a child with autism or a fifth grader with a para or a brother who is not like the rest.

He was, quite simply, just a boy and his dog.

This post originally appeared on CarrieCariello.com.

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